Struggling in Gilbert Arizona

Struggling in Gilbert Arizona

I am 63 years old and have been struggling with what I think is polymyalgia rheumatica for almost 4 years now. However I have not been officially diagnosed with this condition. I also believe I am getting GCA also.

My muscles hurt and every major muscle groups in my body it's getting harder and harder to do anything. Are used to work out every day and now I can't even walk a 10th of a mile or do anything without it in creasing my pain exponentially.

I tried prednisone and it made me feel terrible I was sick my muscles got very weak and shaky and I was very moody and I have to work so I can't be having irritable outbursts at work . Then when I tapered off of it for three weeks I was sick with adrenal insufficiency and it was terrible. I'm not sure what to do now .

Not being able to exercise I feel like I'm just slowly dying and deteriorating. I'd love to have other people to talk to you and hear their experiences.

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40 Replies

  • The obvious question is, have you seen yr doctor or a rheumatologist?? There are some very experienced helpful people on here as no doubt you have seen PRMPRO and Dorset lady who no doubt will be with you as soon as they can. I just want to say. How difficult and depressing it can be - and isolating. Good luck and I hope you get some valuable help. At least you are now on here! With a whole bin have of us that understandx

  • Hi jwb43,

    I am sorry to hear that you are struggling right now. GCA must be addressed as a matter of urgency for the sake of your eyesight. I am sure it would be useful to get a definitive diagnosis. My diagnosis was based mostly on a clinical interview, coupled with a very positive response to Prednisolone, within days, also raised inflammatory markers in my bloods.. Unfortunately steroid treatment remains our most effective treatment, for all the horrible drawbacks, it does control the damaging inflammation, like nothing else.

    It is hard being limited when you have been accustomed to being active physically. I feel better when I have walked each day . I don't generally want to go out but I am better for it.

    As I gradually reduce my Prednisolone dose I feel as if something has shifted underneath the Pred effects. I am hoping that the PMR has settled and I will find my optimum, minimal dose.

    Being pulled up short by this disease has given me the opportunity for a lot of quiet reflection on my life and what is important.some of this has been painful, but I have gained insights into what really matters. I have given up work that took me into people's most painful situations following violent crime after 6 years of not counting the cost. My loving energy is now taken up by the needs of my 2 year old grandson. We do art and crafts together which is a gentle compelling activity. Every child is an artist if he's allowed to be. There has been much learning on this journey.

    I hope and pray that you find your own way through.

  • Hi Gilbert, Happy to help in whatever way I can. I have gone through 7 years of Poly (one year) and now 6 years of GCA. I am a 65 year old man who has always loved to exercise and it's very tough at times! However if you are on the right dose of Pred. then you should be able to run/exercise in regular bouts - maybe for not as long as you would like though!

    However if you have poly/gca you do need to be on pred. There is no way round that. I don't really understand why you have not been properly diagnosed. You need to sort that out in some way and knowledge/experience is key with this illness. So you need to find yourself a very good rheumatologist!

    The main difference for me between the two illnesses has been when I had poly. I had muscle pain; when I got GCA it was headaches!

    Happy to help in any way that helps you.

    Very best, Ian

  • Yes this is very good advice

  • Hi jwb. This illness is not fun, but this forum is a Godsend. I agree with others get yourself a rheumy that can sort you out. Even if you have to go outside Arizona. The is not a quick illness so it will be worth it to get some proper help. Also buy the book that Kate Gilbert wrote Polymyalgia R-- a survival Guide. It is available on Amazon -- even if we have issues with that company. Sometimes pragmatism has to rule.

    I guess we all have to come to terms with what we can do rather than what we can't. Swimming is a good form of exercise since the water bears the weight.Things like pilates are also good in moderation.

    I think we all find that if we fight this disease we can't win-- so a gentle acceptance -- and the Pred at the right dose and we get there eventually -- different people at different rates.

    Warmest wishes


  • Hi jwb43

    Won't add any more than what has already been said other than agree you must get a diagnosis soon as possible

    I read with joy that you are from Gilbert in Arizona, most of our best and most memorable holidays have been in Scottsdale (husband an avid golfer!), have passed your area often on out sightseeing trips. Sitting here talking about it with him right now wishing I was fit enough to jump (!!!) on a plane and come out right now, hopefully one day soon. Take care and here's wishing you better days from Scotland

  • Hi Jwb43,

    You are lucky to live near one of only 3 Mayo Clinics in the world -- in Scottsdale. If you get an appointment there with rheumatology they will surely get you a diagnosis and help you. You can even request an appointment online without a referral although I think a referral from your doctor might get you in sooner. I live near the Mayo Clinic in Jacksonville, FL. and I have been very satisfied with the help I have received there. They accept many different insurances and you can check that online too.

    If you get severe headaches and/or visual disturbances, don't wait. Go to a hospital emergency and tell them you suspect GCA. Your sight could be at risk.

  • Hi jwb43 - There's been good advice from others, so I can't add much. However, I can tell you that getting a diagnosis and coming away from the rheumatologist's surgery, clutching a dose of Pred, made me feel at least 75% better....! My own PMR seemed to come out of nowhere - I'd never heard of it before - my own GP was obviously not 'clued-up' about it; my wife persuaded me to go down the route of private medicine (I guess you have no alternative in the USA) - it was the best £300 pounds I've ever invested! SO - get a diagnosis, make sure you start at the right dose of Pred and accept that this wretched condition can be addressed, even if it takes a while to go! Don't try and reduce the doseage too quickly and just do the excercise that you can manage. It's easy to go walking in the UK - dunno about Arizona tho'......?! You maybe won't want to go out but it's worth making the effort.

    Good Luck and see if you get encouragement from the 'guru' PMRPro and the absolute embodiment of common-sense, DorsetLady

  • Thank you!

  • Hi jwb43,

    Sorry to hear your problems, and welcome from across the pond.

    As others have already said, unfortunately Pred is the only drug that can control the inflammation associated with PMR and GCA.

    The muscle weakness can also be part of the PMR as well as the Pred, which we all know can have some pretty nasty side effects.

    If you've never been diagnosed, does that mean you've never seen a Rheumatologist, or that I wasn't confirmed? If you now think you have GCA then you really should see a specialist. GCA is a problem you really can't mess about with, it certainly is more dangerous than PMR. Afraid I speak from experience, mine was left undiagnosed for much too long, and I, like many others, ended up losing sight in one eye. Please do not let that happen to you.

    I know Pred can be make you feel horrible, but the right dose will help you live your life again, not necessarily as before, but you can still do gentle exercises, short walks, yoga, tai chi, Pilates are all possible. But you must also learn to relax and pace yourself. If you try to do too much, your body will suffer.

    Please go back to your doctor and discuss the way ahead. Good luck.

  • Talk to your Dr. about Actemra infusions, I couldn't take preds either, got a monthly infusion for 1 year & no signs of GCA or PMR.. worked for Me, should be worth looking into... Good luck, & please let Me know if You follow up on this..

  • Beringer, Did you have any bad side effects from the Acterma? And how are you doing now?

  • "I tried prednisone and it made me feel terrible I was sick my muscles got very weak and shaky and I was very moody and I have to work so I can't be having irritable outbursts at work . Then when I tapered off of it for three weeks I was sick with adrenal insufficiency and it was terrible. I'm not sure what to do now ."

    How much pred and for how long? To be honest - I can't imagine how anyone with PMR can mange to work for long WITHOUT pred. I worked - but I was a self-employed translator and by no means full time. i couldn't have got up in the morning and gone to a "proper" job - I'd have been finished before I got there! If you tapered too quickly - of course you had problems, you can't abuse pred I'm afraid!

    I was moody and irritable - and it wasn't pred, it was PMR. I had it for 5 years before getting pred. When you started pred did you immediately try to go back to "normal living"? That's something that doesn't work either - the pred just manages the symptoms to allow a better quality of living, the actual underlying cause of the symptoms is an autoimmune disorder that causes your immune system to attack your body by mistake, believing it to be "foreign". In many ways it is like rheumatoid arthritis - except there is no joint damage, much of the rest is the same though.

    And finally - if you develop GCA there will be a stark choice: take pred immediately or risk loss of sight. Actemra has been mentioned - but it is not yet fully approved for use in GCA so not all insurances in the US will cover it and it is not cheap! It isn't available in the UK at all for GCA - that may change once the results of the Phase 3 clinical trial is published at the beginning of November, it isn't certain. But even so - it will almost certainly have to be used alongside pred for the foreseeable future. The idea is you start with both and the Actemra allows a far speedier reduction of the pred.

    If you think you are developing GCA (what makes you think so?) - then you MUST get a good rheumatologist. If you have a Mayo near you, then go there.

  • I'm amazed you can function at all. You make no mention of blood work, i.e., ESR or CRP. Two tests that look at your blood as part of the id process, although you can still have PMR and/or GCA without elevated levels. Given your proximity to the Mayo Clinic try to get in there. I went to Mayo in Rochester, MN and was very impressed with the process used to confirm the suspected PMR. As far as prednisone goes that is the miracle drug. And yes there are side effects. It is different for everyone but I had the weak shaky muscles and irritability. It does go away in time as your body adjusts and the dose drops. Your awareness is important as is letting those you work with and family know what you are dealing with and the side effects for you. There lots of information on this forum regarding research out there you can read. And as suggested get the Kate Gilbert book from Amazon. As you read it you will feel affirmed. Good luck on your journey. By the way eat before taking the prednisone it makes a huge difference.

  • thank you for your reply. I did go to the mayo clinic. they like every other doctor I've been to said that they did not have a diagnosis because there was no inflammation in any of my blood work and so they thought it was purely mechanical. However my pain started after a surgery and started in my hips both hips. Then I had a second surgery a few months later and the pain started to get much worse and moved into different areas of my body. Then the ortho said it was bursitis so he removed my Bursa and that did nothing but make me even worse all over it specially in the surgery area. I've been to several rheumatologist several neurologist simple orthopedic surgeons and just last week one of the neuromuscular specialist said he thinks it's PMR. My GP had tried prednisone a week at a time and then 3 weeks one time and it didn't seem to help as much as it should have but then it was a very small dose like 4 milligrams tapering down to nothing over 3 weeks. So I'm still not convinced if it's PMR or not. My question to all of you is does your muscle pain migrate from area to area and spread throughout your body. It's in my hips my calves my feet my neck my job back or shoulders. I just want to make sure PMR is really what I have. And I just started getting headaches jaw aches and blurred vision in the last few weeks but the roommate said he didn't think it was GCA.

  • Bah - if you are going to "trial" pred then for goodness sake do it properly. For years the recommended starting dose has been 15 - 20 mg/day (fifteen to twenty), now it is up to 25mg if required.

    Who is "the roomate"? If you have PMR symptoms and headache, jaw claudication ache and blurred vision then GCA MUST be considered. It may not be - but you cannot rule it out.

    I'm surprised at who you saw at the Mayo - up to 20% of patients do not have raised blood markers.

    Take this info to your GP and ask for a proper trial of pred - can't the neuromuscular specialist try it?

    I'm sorry - but the best anyone can offer is a high suspicion of PMR. There is no definitive test - just an assessment made on the basis of the entire clinical picture and, to some extent but even then not 100%, your response to a proper moderate dose of pred. The jaw pain is specifically claudication: you have it during chewing/talking and it goes away when you stop only to return when you resume the activity.

    If you have ANY visual symptoms, blurred vision, double vision, anything but above all transient loss of vision, please go straight to the ER and tell them all, mentioning GCA.

  • I'm right with PMRpro, you've got to use the prednisone properly and for PMR that means starting out on a minimum dose of 15mg per day. It is best to take early in the morning, like 4:30am as you will learn about cytokines as you research. For some the relief is immediate, for others it may take a few days before the inflammation subsides enough for relief. And if you are having GCA symptoms this will require a much higher starting dose and don't wait as your eyesight could be impacted. Not wanting to put fear in you, but GCA is indeed dangerous if not dealt with. You'll learn to reduce and understand your dose will go down over time, not months, maybe years and for some never. If you get relief you'll have your answer. The pain you describe could very well be PMR, it is typically bilateral.

  • Yes it is always bilateral. PS normal. Is this normal for PMR? Is your pain worse when you use the muscles?

  • PS?

  • Text to speech typo sorry

  • At its worst it was pure misery to roll in bed. I had to use walking sticks, knees would give out. I was really affected initially in the knees and it spread to affect the lower body. Also was affected in the shoulders. Went through all kinds of tests and still no one was really sure. However, I would make myself ride on the recumbent exercise bike for several minutes at a time a few times a day. Bear in mind that I was barely pedaling and no additional pressure, but it did help to get me moving. When no one can give you an answer and you stick with a daily dose of prednisone at a doctor prescribed level, usually 15-20 mg when first beginning you will know if you have relief. If you have relief you have an answer.

  • Thank you for your description of your affliction/condition. That is what I'm really trying to find out is how did others condition progress. Mine started after a surgery in my hips both sides and then as I continued to try and function normally it moved into lower legs feet shoulders ect... Every time I would over stress of muscle group it would activate the pain in that area but always bilateral. Was yours bilateral in every area? And did your bloodwork show inflammation?

  • Yes to both questions. As you read through the questions and replies on this forum there are many folks that have experienced some type of major stress or trauma related stress prior to the onset of PMR. You can do a search using a key words in case you haven't done so. PMR is different for everyone, there is no one symptom that fits. Don't stress your muscles, take it easy, learn your boundaries and once you get the pain under control learn new parameters through trial and error, your body will let you know. Also, as you taper there are symptoms too. I refer to mine as leg weirdness. When I asked about it on this site I didn't get a reply so I figure that is unique to me. PMR is a puzzle that is not totally solved yet, but there is excellent research out there as PMRpro noted earlier. Look at it as a long term project, maybe the rest of your days, but if prednisone gives you a lifestyle so be it. None of us wants to be using it!

  • Yes mine did. It seem I was complaining about shoulder pain, hip pain arms and legs. Than when the knees started to hurt, told doctor that my knees have never hurt! Ah finally answers PMR/GCA. Started on 40mg of prednisone, now down to 5mg with some flare ups. Finding that it's a long process but thinking about trying the gym again

  • jwb43, You will feel an opening in your skull in front of the middle of each ear. Your forefinger tip will fit into this depression if you push lightly. Your temporal artery is here, and if you try carefully, sometimes with different fingertips, you can feel your pulse. I have read that as the Temporal arteries occlude with giant cells, the pulse measured here will be slower that the pulse measured at the radial (wrist). If your temporal artery pulse is lower than the radial pulse get to an ER immediately to save your eyes. If not, and you are still convinced by the symptoms that it is GCA, go anyway. Though it has not been perfected, ultrasound and magnetic resonance imaging (MRI) are now being used to diagnose GCA.

  • I tried the pulse rate test you outlined above and the pulse rate seems the same in both areas. My second rheumatologist that i saw yesterday is going to order a biopsy for the temporal artery. That should tell them if it is GCA.

    My main curiosity is if PMR is really what I have. I have four different doctors and only one is saying I have PMR. That is why I want to talk to others to see if my condition is like yours.

    If it is not PMR then no one knows what it is. I am waiting on a second opinion from records I have sent to the Cleveland clinic who is the number 2 medical center in the United States for these types of conditions.

  • A TAB will 100% certain tell you it is GCA if it is positive. It DOES NOT tell you it ISN'T GCA if it is negative. That just means they didn't find what they are looking for - the giant cells that give it its name.

    There are a whole load of reasons for that happening: they aren't evenly distributed through the artery walls so they may have looked at an area that they had skipped, the GCA may not be affecting the temporal artery but may be affecting others around that they cannot get a sample of to look at (the temporal artery is superficial so easy to get a sample and you can manage without it). Not least is the factor that both the surgeon and the pathologist need to be good at what they do - and the surgeons in particular often aren't.

  • The doctor said if it's negative in one temple they repeated in the second temple for back up redundancy testing. I guess nothing is for sure in life.

  • jwb43, Sorry for your frustration, but regrettably there is no definitive test for either disease that has very high confidence limits. For GCA, there is the temporal artery biopsy, you are scheduled for, as well as CT scan, ultrasound, MRI, and PET scan. Any one of these may be better than the others in a given situation. Good luck and keep us posted.

  • The others you've mentioned aren't really much use - if they were they'd be used and they aren't. None of them are any use for cranial artery involvement.

  • PMRpro, Listen to Dasgpta's lecture on July 5, 2016, and look again at methods of non-invasive vascular imaging for the diagnosis of GCA (NCBI). Unfortunately the temporal artery biopsy is the gold standard right now, but has confidence limits as low as 50% in some instances. Also see the Journal of Neuro-Opthalmology December 2013-Volume 33- Issue 4. These non-invasive methods are improving and will likely continue to do so. I was a bio-medical engineer and worked on the Corning Leukocyte Automatic Recognition Computer in the early 1970s. All the way back then, this instrument could perform white cell differentials (using pattern recognition and enzymatic staining) that were more consistent and had better confidence limits than technicians who were trained in hematology.

  • Can anyone tell me if they have pain everywhere and all muscle groups. My pain literally has spread from my hips outward to the bottoms of my feet and into my jaws and face muscles.

    Well PMR burn itself out after a few years without prednisone?

    I am reading the PMR survival guide but some of the symptoms don't seem to apply to me .

  • "Well PMR burn itself out after a few years without prednisone?"

    No, not necessarily - I had it for 5 years without pred, never even faded in the time. I've had over 7 years on pred - still there.

    It is said about a quarter get off pred in 2 years or so, about half in 4-6 years and the rest take even longer, sometimes for life.

    But that doesn't sound typical of PMR - you need an expert opinion.

  • Unfortunately I have had many expert opinions and no one can seem to agree on what it is that's causing my pain.

    I have no information markers in my blood that are high but there is inflammation and muscle tissue. The more I exercise a group of muscles the more they hurt.

  • Before I was diagnosed and treated, I got night pains in the following places: Neck, shoulders, elbows, hands, buttocks, front and back of thigh, knees, and the joint where my legs meet the torso across the front. When I got up and got moving, the pain remained in my shoulders and thighs, but went away everywhere else. Due to my ignorance, I cut down three trees one day and moved the logs and brush. I thought I could work through the pain and eliminate whatever was bothering me. Interestingly, this physical event did stop the shoulder and thigh pain temporarily, but what happened that night was unmentionable.

  • @jwb43

  • jwb43

    As mentioned before we are all different and the reaccurances can be different too. My second flare now affects every muscle group. It started with swollen hands and later that week my knees were feeling weak and then my shoulders to hands and feet started hurting and then a flood or wave of pain moved across my whole body so I was unable to do the most common of activities Such as get out of bed unassisted. I wanted to die from the relentless pain. Since I had experienced throwing up blood twice when given a form of Prednisone twice called a Pack I refused to take it. FinAlly I accepted taking 10 mg offered by a very young doctors assistant and was given something for nausea too and Percocet. About two weeks after that I finally was able to see the rheumatologist and he upped it to 15mg without the Percocet and I saw improvement everyday. If you reach that stage of a flare you will accept the prednisone to get out of hell. I am on 7 now and yes I feel bad but I'm not in hell and can do anything, just with shakes and slower and a sick overall feeling which is disease. But I haven't thrown up blood and always take it in the middle of breakfast. I also had migraine headaches and eye issues and am so glad Inever lost my vision as I knew nothing about Giant Cell Arteriitis and suffered for two months before seeing an RA.

  • Hello Ron's wife can I ask how you're doing now I was reading your response again today and I haven't quite reached that point where the pain is worse than the prednisone side effects but I was wondering how you're doing since leaving this message nine months ago.?

  • Hi JWB43,

    I feel pretty good. All this year the brain fog, hair falling out, clumsiness, shakes, weakness, and just plain feeling ugh was with me but no abnormal weight gain. I reduced to 6 mg and when I got down to 5.75 a flare started and before it was the most extreme flare I upped the Prednisone to 10 and stopped it. That was about 2.5 months ago. I am at 8.25 mg now and not in such a rush. I feel more normal and like myself. I guess this is what I need. Stress hits me too easily so I avoid things that give me anxiety in the past like taking airplanes but doing what pleases me. Thanks for asking and how are you doing now?

  • Reading back I am reminded your diagnosis was unsure. The pain is sneaky stuff and even as well as I feel I know I can overdue a muscle group very easily and feel it the next day a bit under the Prednisone. I hope you have some answers and relief.

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